On Aug 30, 2006, I found out that my then 6 yr old son has Tourette's Syndrome. I'm gonna work it out here.
The caveat is, I'm going to work out pretty much everything ELSE in my life here, too. So, hop on. 'Cause here we go.

Monday, February 19, 2007

The Boy's Huge Heart

No, The Boy doesn't have an enlarged heart. He has a huge empathetic emotional heart. I think it must be there to offset the anxiety part of him. But it's been there since day one. It's one of the more incredible things about him and one of the main sources of pride for us.

Anyway, yesterday, The Boy asked us to record a documentary for him on the Discovery Health channel. He had seen a commercial for it during a documentary on identical quadruplets he was watching. We hesitated but we recorded 'Born Without a Face' for him. Today I watched it with him and his 3 yr old brother. And I have to say, I was so impressed with both boys' reactions.

Here's the blurb about the documentary:Toddler Juliana Wetmore was born with Treacher Collins syndrome. She has no upper jaw, no cheekbones, no eye sockets, and has the corner of her ear missing. Doctors say that it is the worst case ever recorded.

I could write a whole blog on how the Wetmore family is now my new hero group. Juliana won my heart. And the heart of both my boys. I told them that, at any time, if this disturbed them (there were surgical procedures and graphic pictures), we could stop watching. They never stopped and they both watched the whole thing. Lil Bro usually watches for a few minutes and then is playing with cars. They asked lots of intelligent thoughtful questions. The Boy made observations that I wish more adults could have. They showed a picture of the newborn Juliana - and I have to say, it is shocking enough to a stranger - I can't imagine what that moment was like for her parents. As most people were, I was focused on her face and the malformations there. The Boy watched and said, "Hey mom. At least she has all her other parts - they're all perfect!" I have to say, this attitude of noticing what she DID have is how her parents approach things. And it was beautiful to hear that this was his first thought. He kept watching and commenting on things in the half-full kind of way he has. Juliana has no ears so has to use hearing aids that vibrate bones near her ears. I just saw the deafness and The Boy said, "Wow - so she can hear with those things on! That's cool," and "So once they build her a functioning mouth, she'll be able to talk!" He was excited when they showed her taking her first steps. I mean, it was awesome.

Both boys were fascinated. The Boy wants to write her a letter. And I found her mailing address which I will tell him about tomorrow. But tonight, as I was getting Lil Bro in bed, The Boy called to me from his room and said, "Hey mom, can you remember to pray about Juliana tonight?" I told him he could go ahead and talk to God about it - he didn't have to wait for me. Well, I wish I had an instant recorder to capture impromptu moments like this. Because I can't recall his whole prayer. But it was so poignant and sensitive and honest - it almost made me cry. I heard him say something to the effect of "God, please help Juliana. Make all the surgeries go OK and help her face to look the way they want it to." There was more but that was the point of it. During the documentary, they said several times that their goal was to get Juliana a functional face. And that she faced a life full of surgeries. At the age of two, she had already had 14 surgeries. The Boy remembers his 3 (relatively minor) surgeries vaguely. He knows they're scary and hard. So this was very close to his heart.

I just love that my boys watched that and didn't giggle, point, make fun of it in any way. They were totally engrossed and thoughtful. And they love Juliana. I can't wait to read The Boy's letter to her.